rheumatoid arthritis

Hi there, ive just been diagnosed with RA today, I'm now waiting for an appointment to see a specialist, can anyone help explain what will happen next, i'm in so much pain really i shouldn't have waited so long to go to my GP, but i'm only 28 (29 next month) walking my children to school is become very painful as knees and feet hurt constantly.


14 Replies

  • Much sympathy - this is a really horrid time especially when you're so young. First off, look at the NRAS.org.uk website for the pages on newly diagnosed as this is a good & trusted site. Secondly head straight back to your GP to discuss pain relief while you're waiting, or even a short course of steroids, as it could be a few weeks. And thirdly, keep a pain diary and take photos of any swollen joints so even if you're having a great day on the day you get to see the specialist then you'll have something to show them.

    And most importantly, look after yourself! Try to get as much help as you can with your kids and take it easy and try to rest whenever you can. This is probably the worst bit, as once you get to see the rheumy and get started on proper treatment (GPs can't prescribe some of the drugs) things will get better. It's a big shock being diagnosed, so take it a little bit at a time.

  • Thanks, and yeah think i will go back and ask for some pain relief, I'm not sure if i get swollen joints they just always hurt at the moment and to be fair ive gone through some pain for the last two years so i'm probably used to it know its only in the last 6 months its gradually gotten worse. but i will definately go and ask for some sort of pain relief.

  • Hi becks8500,

    sorry that you have been diagnosed with this disease. Just to let you know that there is a lot of help out there for you. As helixhelix suggested, our website is a good place to start. I have put a link below to the section that I think will be of most help to you right now:


    We also have a helpline and you are welcome to ring it to find out more. The number is:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm


    Beverley (NRAS-Helpline)

  • thank you

  • Hi Becks8500 sorry to hear about your new diagnosis and about you struggling to walk the kids to school, but you are in good company here :)

    May I ask who diagnosed you and what specialist you are going to see? Despite my GP telling me he thought I had some form of inflammatory arthritis, I read that only a rheumatologist can actually make that diagnosis. Perhaps you've already had your bloods tested and were positive for RF in which case your GP would most likely be able to make the diagnosis himself/herself.

    When I was referred by my GP it then took 4 months before I saw the rheumatologist for the first time. I was given a triage appointment at the Musco-skeletal clinic after a month and they then made the decision that yes, I did need to see a rheumy, which meant a further wait of 3 months.

    When I saw him, the rheumatologist ordered a bunch of blood tests and scans as he had no bloods or information to go on apart from what I told him and his examination of me.

    I am now waiting for my follow-up appointment, armed with my test results (all negative or borderline/inconclusive) to see if his suspicion that I have Palindromic Rheumatism, will be firmed up and turned into a diagnosis.

    Once the firm diagnosis comes, I hope treatment will very swiftly follow, but because of my negative bloods, I know diagnosis often takes much longer and I may have yet another 3 months wait whilst an MRI scan is done.

    It does differ country and country and region to region within the UK however, but in Cheshire, it took me 4 months from seeing my GP and getting the referral to actually seeing the rheumy for the first time.

    Not sure if that helps at all, but do read the Arthritis Research UK website, i've found it an invaluable source of information over the last few months.

  • Hi thanks for the lovely comment i had my bloods done, don't know how it works but i was positive for RF, just got to wait for an appointment now to see a specialist. I've known i must have had some sort of problem for a while as i've always had aches and pains for as long as i can remember, my mother urged me to see a doctor because she saw how much pain i was in and knows first hand about it as she has osteioarthritis and also carpal tunnel syndrome. and she had the same symptoms as me at a similar age. right now the pain is managable with ibuprofen and paracetamol, but sometimes if ive been on my feet all day its unbearable. sometimes it feels like my hip locks when i'm walking and then it pops as i take a step and that is probably the more unbearable pain mor than anything whether that is connected i couldn't tell you.

  • I hope you can get the bottom of what's going on soon. Glad to hear it's manageable for the time being, and hope you see your specialist very soon x


  • Sorry to hear you've received diagnosis. All I would add to Helix's reply is prior to your first Rheumy appointment he will probably want to order his own blood tests, along with xrays, these will form part of your specific diagnosis. My GP prescribed an anti inflammatory & pain relief when she gave me my RD positive RF results prior to my diagnostic referral later but suggested I withdrew them for few days before the the diagnostic tests so the correct treatment & doses were prescribed. Bear in mind though if you have oral steroids or a steroid injection either could remain in your system for some while & mask inflammation, it seems this is often overlooked by GPs.

    I also found it helpful to take my h along with me to my first consultation, & each since actually, as two heads are better than one, particularly for recalling all that's discussed. If you're fortunate enough to have a Rheumy who's thorough there will be a lot to take in!

    I hope whatever your Rheumy prescribes works well for you & you soon have less painful school walks, I can really relate to painful feet, that's where my RD started. :)

    Let us know how your appointment goes.

  • Hi Becks, just wanted to add to the already wonderful advice! For me and I,m sure others will agree, this now is the worst time for you, the uncertainty, anxiety not to mention pain but as you get started with treatment and support and knowledge that you will get better things can only improve. It's a long road but you must have hope, there are many of us who have been treated very successfully and are able to continue our lives as before.

    I was diagnosed when my daughter was 6 weeks old, used my teeth to dress her, couldn't get out of a chair un aided, cut up my own dinner and I,m not even going to tell you how I managed going to the loo! Being told I had advanced aggressive RA I never thought for one minute I could dance, jog, work, walk around in bare feet again but I can :) and have been for 3 years now (4 years diagnosed).

    Hope you see your consultant soon, get your treatment plan in place. Take care and keep in touch, the people on this site are wonderful and without their support at the beginning I would have been lost xx

  • Thanks hun, got that sounds awful, i've always had some sort of pain etc back pain siatica just last couple months its been unbearable ive had to keep going back to the doctors etc because of my age i dont think they were taking me seriously and then 2 weeks ago they actually gave me a blood test and tested pos for RF, as ive said above my pain at the moment is bearable but sometimes its agony and i just dread standing up, think mornings are worse where i'm completley stiff and can bend my legs to get down the stairs so have to sort of hop, which also hurts because bottoms of my feet hurt to stand on most days. hopefully i can get some sort of treatment soon. but i may go back and ask the gp for some sort of medication to help even if it some anti imflammatory tablet it may help until then.

  • AWWW HONEY! MY HEART goes OUT TO YOU !! I was officially diagnosed with R.A. at 39 years old.. I do believe I Have suffered all my life because I always had pains and my fingers were disfigured... At least NOW You know that you are taking a proactive approach to your health and like you , I waited WAY TOO LONG.. Just stay focused on the things in your life you need to do. I know it is hard when you are in pain, but staying active does help TREMENDOUSLY! When you are at your doctor do NOT BE AFRAID to ask for a referral .. whether it be to a specialist or even pain management ! YOU will have to look out for YOU and things bother you the most are the ones obviously you would want to address with the GP, if you are having nerve pains, I found Neurotin (gabapentin) works GREAT!! My elbow had been hurting because the Rheumatoid nodule there was displacing nerves and tendons and my elbow felt like I had bumped it and I had hit my funny bone... Ya know when they say, "I hit my funny bone and it wasn't funny"..well imagine that feeling right when you hit your funny bone, I would have sensation and feeling for 2 and 3 days at a TIME!!

  • Hi becks8500, sound advise in all the previuos posts. Just one more: listen to your Rheumatologist! I was silly enough to try all the alternative methods before I agreed on taking even Methotrexate. Do as you told and when you'll get your RA under control you can look in to alternative healing. Otherwise a lot of damage can be done to your joints. Good luck and be strong!

  • Hi Becks--- I am was diagnosed last friday with RA--- after 4 years of ' misdiagnosed' symptoms! !! my emotions have gone from relief to being really scared to anger at the specialist who has kept telling me it was' my age" . I was given a steriod injection in my bottom last week which kicked in after 3 days as I dont start the meds for another 3 weeks. May be ask your gp for one-- it has helped .

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